32 days and counting…

**This is a very long and detailed account of the major events of Avery’s surgery and post-operative complications. I can’t even begin to get into the emotions of the past 7 weeks because we are still here in the middle of it, and if I let that wall down, I won’t be able to get through this rough time.**

We are now on day 32 of being inpatient since June 1 from what was supposed to be a 3-7 day admission. We are still in the midst of it so this will be mostly fact based to bring you up to speed on this never-ending saga. Where do I even begin? Ahhh, yes, gut-feelings. If I have learned anything the last couple months, it’s that you have to trust and follow your gut. The very first night of the admission, right before her surgery, I called my mom in a panic. I told her I didn’t have a good feeling about this. I told her I had an overwhelming urge to just pack her up and take her home. It wasn’t a feeling like I just didn’t want them to cut open my baby, it was something I can’t quite put my finger on, just a general sense of unease and a conviction deep down that we just shouldn’t go through with it. I, of course, talked myself out of that state-of-mind, telling myself that I was just unwilling to accept what was going to happen. I regret that. I know hindsight is 20/20, but if I had known then what I know now I would have listened to that feeling instead of dismissing it, but that is often life and here we are.

That first night of admission, Avery was welcomed with what I will call the “trifecta.” This lovely trio consisted of being brought into the procedure room to simultaneously have her IV placed, the NG (from the nose down into the stomach) tube put in, and the first of what would turn out to be 4 painful, lengthy rectal irrigations. And so it began. The surgery itself went very smoothly, which given her history with anesthesia and such, I fully expected and wasn’t at all nervous for. The night of her surgery, however, she had a few unexpected complications. First, her oxygen level in her blood kept dropping to dangerous levels, setting off alarms that we eventually came to ignore. She required oxygen throughout that night and for a few hours the following day. They speculate that her abdomen was so sore from surgery that taking full breaths hurt, so she was only breathing shallowly. They did a middle of the night x-ray to rule out anything serious with her lungs, which came back normal and we settled back in. An hour later they wake me up asking if Avery’s peed since surgery. I guess they have a 6 hour time limit in which they are required to pee or interventions ensue. We were quite a ways past that benchmark so the next 1 ½ hours were spent trying to get her to pee. She was so doped up from the residual anesthesia and the morphine that even waking her to try to go was a challenge. Knowing what direction this was going in if we couldn’t get her to pee on her own, I was desperately trying everything to get her to go. We even got to the point of pulling the old sleepover trick of putting her hand in warm water. Didn’t work. It was honestly one of the hardest points of her hospitalizations. We kept telling her please try or we have to put a tube in to get your pee out. I could see her struggling to go but she was either in too much pain to use the muscles to push the pee out or the anesthesia had made her muscles not want to work. It hurt her to even sit up but she could feel the desperation in our attempts to get her to go so she was willing to try using the commode next to her bed. After trying every trick we could think of, they had to catheterize her. It took changing out the tube size 4 times because her urethra was too small and they kept trying to put it in but it wouldn’t budge. The whole time she kept saying, “Please mommy, I will try. I will try.” And I could see that she really was trying but that poor thing just couldn’t go and she would say “Sorry, I can’t do it.” It was so hard to watch her, already in so much pain, have to have a tube jammed up her urethra while having to hold her steady for them to attempt to do it over and over again. Still breaks my heart.

The next few days, she seemed to do better, but started having trouble when they allowed her to have clears on Sunday. Even though she hadn’t eaten since Wednesday and was starving, she was taking only a few bites of a popsicle or a couple of teaspoons of broth and she would say she was full and kind of slump to the side. Then the doctor came in to check on her and noticed that her stomach was getting a little distended. With her big, flowy hospital gown on, it was hard for me to notice but when the doctor lifted her shirt and I saw that familiar round tummy, a sick feeling came over me. Despite me repeatedly telling the doctors the next day that she wasn’t eating like she should and her stomach was getting distended, they insisted she was fine to go back to a regular diet, no restrictions. Needless to say, her stomach got bigger and bigger, and her pain got worse and worse. They decided that afternoon to send her down for an x-ray because they didn’t like how her stomach looked. Really? Like I didn’t predict this would happen? Before we could even get the results of the x-ray she started writhing in pain on the bed, trying to find a comfortable position with her hand over her pained face. While I kept telling the nurses that something wasn’t right, they didn’t seem too concerned over it. Then she started to vomit and I just lost it. The stress of the whole day finally boiled over and I lost it. I ran like a lunatic out into the hallway and yelled to a bunch of startled-looking nurses, “She’s vomiting! What is going on?” And then I burst into tears. Right there. In the middle of all of these strangers who probably looked at me like the biggest hypochondriac there is. It was just vomit after all, something we all experience from time to time. But it wasn’t the vomit itself that sent me into a panic, it was what the vomit represented. Failure. That was the only thought going through my mind in the chaos of getting her cleaned up. The fear that had been slowly building since the day before, when the doctor pointed out her distention, consumed me and all I could think was that this surgery didn’t work. Even more, I had a terrible feeling that things were getting worse than before surgery. She never vomited before surgery and that had always told us that at least her stomach motility was normal, but what did/does it mean that she was getting sick now? She vomited again shortly after getting her cleaned up and back in bed, so they hooked her g-tube up to try and relieve some pressure or whatever contents were left in the stomach and ordered another x-ray. This time her stomach itself was so dilated and distended that it took up the entire left side of her abdomen and her small intestines showed markedly large loops of bowel with air-fluid levels so bad you couldn’t even make out the other organs on the film. So now her stomach was involved. As we watched her sleep that night, Joe and I were both broken. Just that sinking feeling of “Oh my God, what if this really didn’t work? What if she’s actually worse than before we came in? What if her pain never ends?” Neither one of us said it out loud that night, but we both were thinking it.

The next day they kept her NPO (nothing by mouth) and she did much better. We have come to the realization that she is so much better when we don’t feed her, but I’m pretty sure starving your kid is frowned upon (something I brought up in rounds on more than one occasion). On Wednesday we accidentally got the extension on her g-tube caught on the corner of her bed as we went to put her into her wheelchair and popped it right out of her stomach. What the? Are you kidding me?? They unsuccessfully tried to put it back in bedside and after confirming the failed attempt via interventional radiology, she was back in the OR. The remainder of that first admission was fairly uneventful with the exception of Avery becoming distended and in pain every day she was allowed to eat. We had been told on several occasions that we would know right away, within a day or two, if this ileostomy worked by seeing if her distention was gone. The fact that it was as bad as before surgery was very troubling even though the doctors tried to backpedal on their original claims and told us that we could still see improvement with time. Finally coming to terms that they could offer nothing more than time to resolve her ongoing symptoms, we were discharged 13 days after being admitted.

Three days later, we were back in. We were advised that based on Avery’s size she should be having an ostomy output of around 100ml/day but since she had been putting out 400ml/day throughout that first stay, they were comfortable letting us leave with the warning to call if her output went above 400. Her output climbed to 600 the day after discharge and then to 760 the second day during which she then woke up covered in dried vomit when we went to check on her around 1am. She started vomiting again as we tried to start cleaning up the room. I was in disbelief. I looked at Joe knowing exactly what this meant and he looked at me knowing as well, but unwilling to believe it. The next morning I called to let the surgeon know what happened and they wanted us to bring her in to the ER. She was admitted, because her electrolytes were low and they were concerned about why her ostomy output had increased so much. She stopped eating after breakfast on Friday morning and wasn’t allowed to eat anything AT ALL until the following Wednesday. I am not kidding. And to make matters worse, she wasn’t allowed to leave her room at all and Mady was not allowed to enter her sisters room until the following Thursday, because she was under contact precautions in case this was an infectious process. I honestly think a week in prison would have been easier to tolerate. Her output climbed and climbed despite being unable to eat or drink for that many days which was both puzzling and troubling to all her doctors. She was putting out around 2400ml/day. Yowza!! They tried several different medications to slow the output without results and then decided to try a clonidine patch to help slow things down. They placed the patch on a Tuesday while she was putting out about 2200ml. The next day she was on track to beat her record, but abruptly stopped putting anything out around 5pm. I was hyper-aware of this swift and significant change in her output and I became increasingly worried as the hours ticked on without a single drop in her bag and with her stomach becoming larger and harder by the minute. Around 9 pm the doctors became concerned and thought she was having a bowel obstruction. They ordered more x-rays and had the surgical team come evaluate her. They ripped off her patch fearing that this is what had completely stopped her output and immediately made her NPO again. There was a lot of confusion as to whether she was having an actual obstruction or if she was in the middle of a pseudo-obstruction flare up. They said there was no real way to tell looking at her films, and the only way to know with certainty is to open her up and take a look for blockages or adhesions. It was decided that we would wait and watch. By morning, her stomach was smaller and softer so they determined that it was a pseudo-obstruction of her small intestines. There was a lot of anger and chaos throughout that stay in regards to her care, and plenty of tense moments between us and the doctors while we grilled and questioned every decision they made. The most prominent memories of that admission were that of her being unable to eat for 8 days of her 11 day stay and us being trapped in her room for a full week. Ultimately, her output slowed to less than 500ml/day for 48 hours straight and she was discharged and sent home without anything to control her output thinking that it may have been a bug or her body adapting to the surgery that caused all the high output.

We thought wrong. Over the next few days, her output climbed from 700 to 900 to being at 1200ml/day four days after getting home. That Friday I called the surgeon again to see if we could try something at home to help slow things down but within 10 minutes of calling, the nurse called back and told me that we needed to bring her back into the ER. What?!? It was hard to rationalize taking her in as she was acting the same as usual. She was still peeing and it was clear so I knew she wasn’t dehydrated and although she was tired and laying around and having stomach pain, that was “baseline” for Avery and not concerning. Joe and I decided to wait the weekend to see if it was just a fluke and would go down on its own, but no such luck. On Monday, with no decrease in output, we gave in and reluctantly brought her into the ER thinking she may just need replacement fluids for a few hours and we would be on our way. Nope. As we got up to our room we were greeted by all these now familiar faces of the nurses and CNAs we had gotten to know who tried to put a positive spin on this hospitalization by showing us the view from our room which was perfect to see the fireworks that would be shot off from Navy Pier the following night for the 4^th of July. Awesome. Her sodium was low which can cause neurological complications so they put her on maintenance fluids and starting replacing her output through the IV for anything over the 400ml/day they wanted her at. They agreed to retry the clonidine patch at a quarter patch this time instead of the half patch that maybe caused her output to shut off completely in the previous admission. They cut the patch into a quarter and within 36 hours her output was down to around 600 and seemed to be dropping. We were discharged after 4 days with her output still about 600 but the doctors being ok with a higher output goal given her history of sustained high output. We were convinced that the patch at this lower dose would solve the problem for good and we thought things would finally start returning to normal. At the time of discharge, the outpatient pharmacy refused to fill her clonidine patch stating that the patch shouldn’t be cut because it can change the way it works. After a lot of frustration, they ended up switching her to oral clonidine instead of the patch. We didn’t care what it was, as long as it kept her stable and out of the hospital.

Wrong again. Life was beginning to return to normal. Joe and I finally went back to work, Mady’s usual “youhaven’tgivenmeenoughattention” acting out had gotten better and I had a good feeling about staying out of the hospital this time. However, very soon after discharge, her output started to climb again. By the weekend she was back up to over 1000ml/day, but we were giving it time, thinking that the medication just needed to adjust things and it would eventually go down. The following Thursday, we had a follow up with her surgeon and motility specialist and we expressed our frustration at having all of these unexpected complications from a surgery that hasn’t even really worked like we were told it would. We told them about her almost daily pain and distention and they said they were more concerned with getting her output under control first and we would focus on her pain when her output stabilizes. Awesome. Since we were “focusing on her output” we let them know that her output was around 1200ml/day and they seemed casual about it and just told us to go get labs drawn at their lab. We asked to do the labs the next day at a lab near our house for convenience sake. We asked about switching back to the patch instead of the oral formulation of the medication and they said to call them Monday if things didn’t go down. They didn’t. So this past Monday I called to ask if we could change it to the patch in hopes that it would start controlling her output again. Joe, Mady, and I were all swimming in the pool, having fun, when I got the call back from the doctor. It was 3pm and I was about to get out of the pool to go get ready for work that night when the nurse called and told me that her sodium level was very low so we needed to bring her into the ER now. Oh. My. God. I immediately thought “there is no way we are going back in” so I asked if it was really necessary, is there something else we can do and she said, “Her sodium is at a level that could cause seizures so it is very important that you come in. I’m going to call down to the ER and let them know you’re coming so what time should I tell them you’ll be there?” Well, that was the end of that conversation. There’s not much fighting to be done when they bring seizures into the mix. Our day took a 180 degree turn and I immediately scrambled to find someone to cover my shift that was to start in 1 ½ hours. Oh yeah, and the pharmacy scheduler was out of the office til Tuesday. So I was left to figure it out myself and thankfully a good friend saved my butt and volunteered to go in for me. (If you are reading this, Sarah Lopez, THANK YOU!) The intense frustration of the situation was felt by everyone as we packed, for the fourth time, to go to the hospital and called around to find someone who could take Mady. Once again, we thought that it would be a quick ER trip to replace her sodium and hopefully we could be on our way but, once again, we were wrong. And here we sit, 4 days into our 4^th admission for a surgery that should have kept us here a maximum of a week. They replaced her sodium and started her back on the clonidine patch this time giving her the half patch that they had started with originally, but wanting to be cautious given the complete shut down of her output and pseudo-obstructive episode she had on admission #2 with the half patch. Her output has dropped, her sodium is stable and aside from some major fatigue, she is tolerating the patch at this higher dose. We will hopefully be able to be discharged tomorrow and we will once again see how long we can stay at home. Fingers and toes crossed!

Overall, I feel like I have adapted to the physical changes in Avery’s body and was never physically sick looking at it like I feared. The process of taking care of the new equipment wasn’t hard to learn and I felt comfortable doing it soon after surgery. However, given the high output she has, it requires more time and a little extra work than I anticipated. Her bag frequently fills up with gas, so there are many times when I have to “deflate” it 3 times within an hour. This also poses a problem while driving. Almost every time we go somewhere that takes more than 20 minutes to get to, we need to pull over and empty her bag, or if I’m lucky and Joe is with me, I crawl into the back and take care of business while he continues to drive. We obviously still need to keep track of the exact amount of her output so when we aren’t at home where we can measure, dump, and wash out the container, we have to “store it” in a jar with a lid until we can get home to measure it. So, picture me in the heat, in public bathrooms (some without A/C), collecting output in an old Jiffy Peanut Butter jar and then stuffing it back into our new ostomy backpack to carry around with me the rest of the time we are out. It definitely isn’t my favorite part of the process. But despite all that, the worst part, by far, is the fact that Avery is still distended, still in pain, and is now dealing with all these changes to her body and extra hospitalizations on top of that. It was what I had feared most and, although the doctors say there is still a chance that things could start working better, my hope dwindles the farther out from surgery we get. As much as I hate it, only time will tell.